James’ story

With thanks to the Shared Lives scheme and the household involved, below is ‘James’ story, which illustrates that with the right planning, investment and back up, Shared Lives can work for people who have been labelled ‘complex’ or ‘challenging’. We are keen to talk with colleagues involved in the Transforming Care agenda about the potential for Shared Lives as a route out of hospital for people with learning disabilities:

After a lengthy stay in a residential hospital for people with learning disabilities, James was discharged home with depo medication to help to control psychotic episodes. On his return home, James was abused by a family member. As a result, James was taken to a place of safety by the police. He was then given future support and accommodation options which included Shared Lives.

James decided that Shared Lives was a good option for him and was matched with a Shared Lives carer called Phil. Phil already had one person living with him in a Shared Lives arrangement and he also had a lot of experience. He had previously supported adolescents as a foster carer and was experienced in supporting people with ‘challenging behaviour’.

Phil supports James to experience lots of new things, including supported employment, independent travelling, grey hound racing and fishing. James went on holiday with Phil and his family and joined in with all that they did. They enjoyed this break together and it provided them all with respite from day to day life.

Whilst living with his Shared Lives carer, James’ depo medication was assessed and discontinued due to the risk of long-term side effects. His mental health deteriorated and he returned to having periodic psychotic episodes. When James is unwell which has been occasionally, he is readmitted to hospital, sometimes under section.

When James is well he lives happily with Phil. He has a clear support plan, with additional Shared Lives support carer input to enable Phil to take regular breaks. James knows this person well and her support is flexible, depending on James and Phil’s needs at the time. For example, sometimes she moves in so James continues to live at home when Phil goes away, which means minimal disruption to James’ home life. At other times James can go to her home, where she provides day support and overnight respite. James also has regular input from the community learning disability nurse and community psychiatrist.

James’ Shared Lives scheme worker is honest in saying that the Shared Lives arrangement can be challenging at times especially when James’ mental health deteriorates. But with the good support systems in place which are reassuring for James and Phil, both value the family life their share and neither could imagine James living anywhere else.

Shared Lives in Derby

My colleague Angela Catley of our sister organisation, Community Catalysts has kindly written a guest blog on their work developing Shared Lives in Derby, which is part of the area’s transformation of institutional care for people labelled ‘complex’ or ‘challenging’:

A couple of months ago Community Catalysts was asked by Derby City Council to help build the capacity of its in-house Shared Lives scheme.

“In Shared Lives, an adult (16+) who needs support and/or accommodation becomes a regular visitor to, or moves in with, a registered Shared Lives carer. Together, they share family and community life…Uniquely, Shared Lives carers and those they care for are matched for compatibility and then develop real relationships, with the carer acting as ‘extended family’, so that someone can live at the heart of their community in a supportive family setting”

The council and their health colleagues are busy thinking how to provide compassionate, personal and responsive support to people labelled as having ‘complex needs’. They knew that people who use their existing Shared Lives service get amazing outcomes and wondered whether, with some work, similar outcomes could be achieved for more and different people.

So much potential.

The existing scheme already has procedures and systems that govern the way it recruits, trains, approves and monitors its Shared Lives carers; matches carers with people who need support and ensures the resulting arrangements work well for everyone. What the council wanted from Community Catalysts was help to consider how these existing systems might need to change to make the service more accessible and tailored to people with much more complex needs.

Every individual is just that…an individual…much much more than a sum of their labels and experiences of serviceland. That said the folks we would love to welcome into the world of Shared Lives are well labelled with tags like ‘forensic history’, ‘sectioned’, profound disability’ and ‘challenging’. These tags hide the individual in a way that feels uncomfortable to us all right now but hopefully as we start to make the potential a reality the people will emerge from behind the labels.

To try and help the scheme build its capacity and to begin to offer a more specialist Shared Lives services we know we need to consider how we differentiate between existing Shared Lives carers and those with more specialist knowledge and skills (all without creating tension or divisions). We are busy thinking about

What if this was me?

Sir Stephen Bubb caused something of a storm when he first blogged that he had been invited by NHSE CEO Simon Stevens to convene a committee to make recommendations about commissioning new kinds of care for people with learning disabilities who are currently poorly served by ‘special hospitals’ or ‘assessment and treatment units’ of the kind seen in the Winterbourne View abuse scandal. Bubb subsequently recognised he had struck the wrong tone and subsequently made tangible attempts to engage with people with learning disabilities, including representatives of the 100 people with learning disabilities who gathered with CHANGE in Leeds, who then took their recommendations to a summit in the Autumn. Simon Stevens called those recommendations the clearest and strongest policy document he’d read thus far in his new roles and I think Sir Stephen and his committee recognised their strength as well. I had the privilege of co-working with Shaun from CHANGE as he facilitated and presented on rights at one of the committee’s meetings and the committee has said it will focus on stronger rights as being inseparable from stronger systems or commissioning.

So it is a report which didn’t have the most auspicious beginnings, and which is hardly the first attempt to make recommendations for change, after three years of well-intended work by good people, which has nevertheless failed to make any impact upon the numbers of people being admitted to institutions. But it’s a report which I believe may well make some more radical recommendations than many which have preceded it. This may be because we have had an ‘Improvement Programme’ when what many have been calling for is a closure programme.

The people with learning disabilities were certainly clear that they were calling for closure of all institutions. Shaun works on closure programmes in Easter Europe and told the committee in no uncertain terms that in his experience of being a professional who has a learning disability, it was easier to be taken seriously as a colleague and a leader in Eastern Europe, despite their recent history of institutionalisation, than the UK.

The issue of closure is fraught with risk though. What if the institutions closed and there was nowhere suitable for people to go. The long-stay hospital closure programmes of the ‘90s swept away a large number of outdated buildings, but some people felt abandoned, or found themselves living in care which felt institutional despite the smaller building. There will always be people with learning disabilities who have mental health problems, and in some cases they will need to be admitted to hospital. Two points I’ve heard recently at events have seemed to me to offer a useful way of thinking about this issue.

The first is that people with learning disabilities are, sadly